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Archive for ‘Working and Health Activism’

As a leader of a health community, it’s important to keep an eye on your progress. You work hard on presenting the best info, stories, and truly connecting with others. A great way to check the pulse (medical puns are always welcome) of your community is through tracking and analytics. If you’ve ever wondered – I want to know which posts are my best and how people are finding my blog? We’ve got an upcoming video and live viewing event for you.

We know data and behind-the-scenes tracking isn’t everyone’s strong suit – but believe everyone has the right to see how they’re doing! So we’ve created this new webinar event to teach you more about Google Analytics, answer popular questions on the topic of tracking, and really help you get to know the back-end of your blog better.

We’re bring together our own metrics master Andrew Hopper to dig into Google Analytics and teach us all more about how we can utilize data to get to know our blogs better. Andrew will be delving into and MS and Ulcerative Colitis Health Activist Jackie Zimmerman‘s blog MSUnderstood to walk her through the analytics on her blog and answer her questions. Andrew will discuss the following topics:

How to install analytics tracking on your blog

Tracking metrics that really matter

Choosing the best analytics program for you

Setting your analytics goals and benchmarks

Interpreting your analytics and identifying progress and success

And more!

We’ll be recording the video webinar beforehand but hosting a live release and viewing party online for people to watch and comment together in real time. It’s going to be a fun new way to engage with content and get a great conversation going! RSVP to attend here and we’ll send you the details for attending our live viewing party this Monday at 4pm ET!

Every day, it seems there are more in person events for Health Activists and their communities. Whether it’s a conference, an awareness event, a tweet-up, a networking event, or something in our Speakers Bureau Program – there are so many important offline events to attend. By getting involved, it’ll help solidify your identity as an advocate and really uncover new ways for you to take your efforts to an elevated, professional level. You never know the opportunities that may arise from networking events – which is why it’s so important to get the most out of them.

For some (like WEGO Health’s own Bob Brooks), public speaking and socializing come naturally. But for others, planning ahead could mean the difference between being too nervous to go and being prepared to attend and having an amazing, valuable time. So, in conjunction with Bob, we’ve created a video to help Health Activists get ready to make the most of these offline, in person events.

In this first video, Bob delves into the philosophy behind in person events and what you should expect and prepare ahead of time. A gifted speaker (and, if you’ve met him – a really skilled socializer), Bob has some great tips for you to consider. Even if Health Activism isn’t your full-time job, there are some job-related networking techniques that will be helpful for taking your awesome online personality face-to-face. In line with our Working and Health Activism month, this video is a great way for Bob to share what he does every day for work and how it can really influence others’ Health Activism.

You can’t talk about Working and Health Activism (or working and living with a chronic condition) without discussing the topic of disclosure. Way back in March we talked all about health disclosure and the “do you tell?” question. Health Activists had a lot to say on this topic. Today Tayla shares a bit more into the decision-making process behind disclosure because, at the end of the day, it’s a personal, individual decision that you’ve got to make for yourself. –Amanda

Should You Disclose Health Information to Employers?

by Tayla Holman

One of the biggest decisions you’ll have to make when you go back to work is whether to tell your boss about your health condition(s) or not. Ultimately it is your choice, and no one can tell you whether you should or should not. But before you do anything, you should weigh the benefits and consequences of disclosing your health information to your employer.

Why You Should:

If something should happen to you health-wise and you are unable to do your job, you don’t want your boss to think that you are simply underperforming. Of course, you want to tell them beforehand so it doesn’t look like you are trying to weasel your way out of disciplinary action.

Another reason to disclose your health information is that if your employer knows that you have a condition that may hinder your ability to do your job, he or she may decide to rework your responsibilities to accommodate any time off you may need. You might even be allowed to work from home, if possible.

Why You Shouldn’t:

If you feel that your condition is under control and will not have an effect on your ability to fulfill your work obligations, keeping it to yourself may be your best bet to avoid unnecessary discussion and commotion.

However, if you want to have your illness on record in the event that something does happen, you can go to human resources if you don’t want to speak to your boss directly. They can intervene on your behalf if you do end up needing to take time off.

If you’re still on the fence, remember that you have legal rights in case your employer isn’t understanding or respectful of your medical condition. The Family Medical Leave Act “entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons.” According to the Department of Labor’s website, the FMLA allows eligible employees to take twelve workweeks of leave within a 12-month period for:

the birth of a child and to care for the newborn child within one year of birth;

the placement with the employee of a child for adoption or foster care and to care for the newly placed child within one year of placement;

to care for the employee’s spouse, child, or parent who has a serious health condition;

a serious health condition that makes the employee unable to perform the essential functions of his or her job;

any qualifying exigency arising out of the fact that the employee’s spouse, son, daughter, or parent is a covered military member on “covered active duty;” or

Twenty-six workweeks of leave during a single 12-month period to care for a covered servicemember with a serious injury or illness who is the spouse, son, daughter, parent, or next of kin to the employee (military caregiver leave).

Employees are also protected under the Health Insurance Portability And Accountability Act, which “provides federal protections for personal health information held by covered entities and gives patients an array of rights with respect to that information.” There is also the Americans with Disabilities Act. The ADA prevents employers from discriminating against disabled individuals throughout the job process, as well as with regards to hiring, firing, advancement, etc. Between these three acts, employees have several rights that protect them in case of a medical emergency.

What are some of the reasons you have or have not disclosed your health information to your employer? Have you had experience with FMLA, ADA, or HIPAA?

Today’s post is about something many of us struggle with – time management. When you’re balancing a variety of things – it’s challenging to make sure everything is getting enough attention. Colin delves into the concept of time management and offers some tips for keeping things organized when you’re trying to give 110% to everything all at once. –Amanda

Health Activism and Limited Time

by Colin DeMatteis

We’ve all been there: trying get some work done in the office when we get a phone call or an email catches our attention. Or at home, a child or sibling calls for attention while we are trying to hammer out a blog post; or a small kitchen fire stops us from writing a forum comment (some houses are more chaotic than others).

But more often than not it’s the simple distractions that stop us from doing what needs to be done – perhaps a television in the background distracts us, or keep refreshing our email or skimming the New York Times when we could be getting something done.

Health Activists, you know what I’m talking about – how do you make the time to blog or vlog about your passion when there is so much more that needs to be done? We at WEGO Health came up with this brief and helpful list of time management tips for anyone looking to squeeze some more productivity out of their day.

1) The Myth of ‘Time Management:’ Okay, this is a little bit about semantics, but it’s important to changing our mindset while scheduling our day. Instead of thinking of this process as “time management,” think of it “personal management.” There will always be 24 hours in a day, (unless some catastrophic orbital event occurs,) so we’re really organizing ourselves rather than our time. We cannot control the flow of time, but we can control how we use our hours.

2) Pay attention to where you are wasting time: Track yourself over the course of a week or two, writing down what activities you do and how long you do them. Include small distractions like pausing during a task to check email. Log all of these and figure out which can be reduced or cut. Remember, this is not about changing time: it is about changing behavior.

3) Use your information to create a time budget: Especially for health activists, keeping track of new medical advances, fundraisers, or developments within the FDA can take a big chunk of our day, even when we’re not distracted. Set a budget and stick to it, with balanced time to let your mind relax. Try 30 minutes of research or writing followed by 30 minutes of email, news, TV or anything non-essential. Switch back and forth to stop yourself from getting overwhelmed or burned out.

4) Prioritize, prioritize, prioritize: And be ruthless about it. Start the day with a list of what needs to get done and decide which are truly essential. If you have any extra time left over, then take care of the next few items on your list. And try to focus on one item at a time – multitasking is not so useful as we once believed, which leads to the next point…

5) Avoid the myth of multitasking: About two years ago, the Associated Press ran this now-famous story that cited a Stanford University study showing people who multitask the most are often the worst at it. The study showed that ‘low end’ multitaskers, who use 1 to 2 different media at any given time, are better at multitasking than ‘high end’ multitaskers, who use 4 or more different media.

The lesson: try to cut yourself off from the overwhelming number of stimuli we all face on a day-to-day basis. Phone calls, text messages, email, high speed internet, browser-based games, multi-tab browsing; all of these can put us into a type of sensory overload, making it impossible to concentrate on a single task and accomplishing nothing. Take steps to remove yourself for brief periods of time: thirty minutes is all it takes to get some solid blogging or research done. Then, you can catch up on the latest breaking news.

6) Don’t forget the inspiration: As Health Activists, you’re working for something very near and dear to you, something that may not pay your bills but at the very least lets you know you are contributing to what may be the most important issue for human beings: The developments, questions, and debate for our health. Blogging and vlogging can be thankless and difficult, but at least here at WEGO Health we welcome everyone with something to add to the conversation. When in doubt, look to your fellow Health Activists for some truly inspirational stories or maybe some more famous bloggers for inspired quotes.

In terms of writing, Ernest Hemingway once said, “You must be prepared to work always without applause.” Perhaps that is still true, but he didn’t have access to a comments section.

What are your biggest struggles with keeping your Health Activism going when you’re working on lots of other things at the same time? What tips do you recommend for making the most of the time you have?

Today we have an interview with an awesome Health Activist – Marla Murasko – who you may recognize from last month’s Advocating For Others webinar. This interview is a look into Marla’s advocacy and hints at our September topic: Working and Health Activism. Marla started her own online community for Mom Entrepreneurs who are also passionate about Special Needs causes. When she’s not focused on Health Activism and caring for her son Jacob, Marla enjoys taking time out to work on her business – another one of her passions. It’s been wonderful getting to know Marla and to hear how became a Health Activist and how she continues to advocate for her son and provide a support network for other working moms.

WEGO Health: Hi Marla, thanks so much for taking the time to share with us. You’re doing so many wonderful things for the Special Needs community and I’m excited to learn more about your work and your passion! Can you tell us a little bit about your background and how you became an advocate for the Special Needs community? What made you get involved in the first place?

Marla: I have always been involved in the special needs community even way back to my high school years. I was a one-on-one buddy for a child with Down Syndrome during my study hall period, volunteered for Special Olympics and was Regional Director for 4 years of the Somerset County Tournament of Champions. So my passion for helping children with special needs started a long time ago.

However, since the birth of my child 5 ½ years ago, who was diagnosed when I was 4 months pregnant with a congenital heart defect and then diagnosed at birth with Down Syndrome it brought this passion closer to my heart. Now it was my son who I was advocating for, so it got more personal for me.

WEGO Health: Your Health Activism really started with self-education, research, and by becoming an empowered patient – can you tell us more about that? How did you empower yourself and what tips do you have for other women (and men) who may be going through a similar experience?

Marla: My health activism truly began the day my son was born. When my husband and I learned of my son’s heart issue during the ultrasound, we were told that the percentage of him having Down Syndrome due to this diagnosis of his heart was extremely high and the only way to confirm that he would be born with Down Syndrome was to do an amniocentesis. We declined that test for personal beliefs. However, to be respectful of my husband’s wishes to not stress myself out for the remainder of the pregnancy by going online and doing research, I truly waited until he was born. Even after his birth it was still hard to digest the fact that he had DS, I went through a short period of time where I went from denial to grief. Then had the opportunity to have a very personal conversation with a hospital chaplain who helped me to realize that I was going to be my son’s biggest advocate. What I would like to say to parents of special needs children is we all have been there, we all have asked the same questions, why him, why us, what are people going to say. That’s normal, that’s part of the grieving process. But that the greatest gift you can give your child is to advocate, educate and take part in their lives. You are going to be their voice. So become as knowledgeable as you can about their rights, your rights, the diagnosis, treatments, insurance, specialists, etc. The more informed you are, you can make better decisions with regards to the care of your child.

WEGO Health: I know that you wrote a book, Jacob’s Journal – My Journey Home – can you tell us a bit about what inspired you to write it and what advice you’d offer other Health Activists who may want to get involved with writing a book?

Marla: Jacob’s Journal – My Journey Home was created through a journal that I had kept at the hospital, of the information that I was being told by the medical profession, the feelings and experiences I was going through and basically to document Jacob’s journey as he grew and progressed. Initially there wasn’t any intentions of writing a book, but through my journey I felt that the information and experiences I was having may be helpful to other parents and decided to share our journey. I did a lot of research as I documented different medical terms, associations, etc. My only advice about writing a book is be patient and passionate about what you are writing about. It may take a while to finish it may not, but you want it to be genuine.

WEGO Health: How did you get involved with your organization “Special Moms Entrepreneur Club”? What was the idea behind starting it?

Marla: SpecialMoms Entrepreneur Club was created out of a need I felt in the special needs community that wasn’t being addressed. As a mom, business owner, entrepreneur I was involved in a mom entrepreneur online community that provided great business information. But what I realized was that only a handful of these members were mothers of special needs children and business owners as well, so it made it hard for them to be able to relate to my particular situation of managing both. However, I felt that when I joined special needs communities it was hard for them to relate to my needs of support from a business perspective. So without having to go to different communities for both personal and professional information when it comes to being the mother of a special needs child and a business owner, I decided to create my own community that would marry the two together and provide a venue to empower mothers of special needs children to follow their dreams of also becoming business owers.

WEGO Health: What made you take your crusade online? What’s the best part about leading your community?

Marla: The best communities are online. You don’t have to be local to other mothers to find a common bond. You can be from two different states and have the same passions and circumstances, so taking it online just seem like the most naturally way to go.

I love leading my community because I love to empower other women, I love to advocate for the special needs community and what best way to do that but through my community.

WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?

Marla: I think my proudest moment was the completion of my book, becoming a first-time author not many can share that title.

My most challenging has been the public school system, and getting my son in the right educational environment with the right support system to make him successful.

WEGO Health: Is there anything you wish the general public knew about the Down Syndrome or the Special Needs Community?

Marla: That we are parents also, we just may have a few more struggles than most. Engage us, engage our children. The world will truly be a better place if everyone just took the time to understand that our children are not different just beautiful and unique.

WEGO Health: How do you raise awareness? What can others do to get involved?

Marla: I raise awareness through my SpecialMoms Entrepreneur community, blogging, organizations I am involved with from being a member to being on the Board. Just get involved with something you are passionate about.

WEGO Health: What next for your community? What are your goals for your organization and what are you most looking forward to?

Marla: I want my community to grow, that it becomes a true source of reference that is being recommended by individuals, organizations and that businesses want to be acquainted with it because they see it as a valuable tool for the special needs community.

When entrenched in your work, you’re bound to learn a lot about yourself: what gets you excited, what you’re awesome at, what you aren’t so great at, what you like, what you dislike, what you’re truly passionate about, and where you want to go next. You’re also going to learn particular skills that will help you from then on, in lots of areas of life (your Health Activism, perhaps?). In fact, no matter what your job may be – you gather some pretty great life lessons (and some memorable stories) to take with you. Whether it’s a retail job of yore that taught you the value of being organized or a waitressing job that taught you to always tip your servers well from then on (these are two I’ve learned) – there’s a huge range of awesome lessons and skills you’ve collected. Which of these workplace lessons and experiences have influenced your Health Activism?

What lessons have you learned from the working world that has influenced the way you interact with and lead your online health community? Did working as a teacher inspire your “teaching-style” blog posts? Did doing research for a company inspire you to stay up-to-date on all the latest health research? Maybe you took photographs one summer and that has helped you pick the very best images to accompany your posts. Perhaps you’ve dealt with disgruntled customers and that has helped you learn how to deal with angry commenters online. Maybe you did public speaking and that’s helped you vlog. The possibilities are truly endless – and will be really fun to hear. So – share a quote, an anecdote, a quick lesson, or a whole post on this topic with us. At the end of the month we’ll highlight some great ones and hopefully learn a bit from each other along the way.

Leave us a comment with your story, lesson, or link to a post on this topic! What skills or lessons did you learn at a job that influenced your Health Activism?

We have hosted (and loved) our first two Health Activist Tweetchats (#HAchat) but we want to make the chat even better! As we’ll be discussing more this month – everyone is on different, very busy schedules – but we’d really like to pick a time for #HAchat that works for as many Health Activists as possible and host it as frequently as you’d like! So, if you could take a minute (and, I promise, it shouldn’t take a second more!) to fill out this poll – that would be awesome! Once we’ve gathered a bunch of responses, we’ll be sure to let you know when the next chat is and what the #HAchat schedule will look like from then on!

There’s something about the end of summer and the beginning of Fall that reminds us we still have some time left to buckle down and accomplish great things this year.

For the month of September, we’ll be focusing on the idea of working and being a Health Activist. That encompasses a lot of different incarnations as everyone is in a slightly different place with their Health Activism. This offers an amazing opportunity to learn from each other and collect some tips for improving some of the pieces you struggle with and share the parts of your advocacy you’re really proud of.

Let’s take a peek at how people “work” in their communities and personal lives to make a difference. Maybe you’re a working professional with a full-time job, pursuing Health Activism as a part-time role and hobby. Or maybe you’re a professional Health Activist, utilizing your online community to pay the bills. Or maybe you fall somewhere in between. Perhaps you’re just getting into Health Activism and want to see how to make this a sustainable freelance career for yourself. We hope to be able to connect Health Activists who have been doing this for a while with those who are still wading into advocacy and learn a ton.

As you can see – there’s a lot of ground to cover. Look for a lot of “back to basics” content this month (it is Back to School season after all!) that will help you re-focus your efforts for the last part of the year and really find a second wind. The fall is known for having a multitude of Health Observances for a variety of health communities – so we’ll highlight how you’re raising awarenss in big ways as well. And there will be a bunch of tips shared, stories of lessons learned, and multi-media content like videos on how to bring the skills of the workplace into your Health Activism … and vice versa!